| Summary: | 碩士 === 國立台北護理學院 === 生死教育與輔導研究所 === 98 === This research is based on the whole life experiences of rare disorder patients with motor neuron disease, who are also named as “Freezing Man”in Taiwan,to discuss the initiatives, autonomy, and what the reflection and inspiration to the professional services such as medical services and social welfare for the disadvantaged minorities in Taiwan.The research subjects are three patients with motor neuron diseases who experienced the threat of life because their muscle of limbs,speech, swallowing or breathing is keeping atrophic and weak. The patients not only need medical care to maintain their physical functions, but also need huge and long-term social and practical support to cope with the overwhelming threat of their life which is caused by the disease and the disability.
The research method is the narrative-approaching oral history, the research subjects are the participators in knowledge production, and their experiences are the important knowledge foundation and practical guide. This research finds that the growth and the life experiences of the patients will shape the coping and the adaptive style when they face unexpected difficulties. If the patients keep the hope to the future and exert their initiatives by positive health care, it would maintain better physical function and better life quality, and will crack the dark curse from the medical supremacy with a dignitary life attitude. The mutual support, understanding and care between patients become the important mental and life supporting strength for the freezing life. This research also finds the importance of family and social multiprofessional supports which is integrated by policy. Therefore, this research suggests helping professionals to break down barriers and mobilize all the citizens and the disadvantaged minorities to cooperate, and to be taught by suffering, and to fully communicate with patients. Thus, we can develop rare disorder and other disability groups to participate social production ability and value, to build up a long-term supporting community through individuals, family, society and whole country. It can gather the strength to promote the long-term health care policy which indeed meets people’s need.
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